Sonenshine: A life-and-death conversation

To encourage advance health care planning, April 16 is National Health Care Decisions Day. Most adults put off planning and may be confused by conflicting information and myths about advance health care planning. Photo Credit: iStock

Americans are getting older but not wiser. We are living longer and stronger, but we are failing to face up to some important aspects of life; namely addressing the topic of death and dying. Americans are vociferous debaters except when it comes to the end of life when we often grow silent.

Along comes a new report by The National Academies of Science -- "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life" -- spelling out the hard truth about the need to improve public education and engagement around the unpleasant but inevitable fact that we all die.

Before you stop reading and pretend this subject doesn't impact you, think, again. It is tempting to write off dying as an individual problem -- not worthy of national conversation. But there are costs, emotional and real, to the end-of-life cycle and we are avoiding confronting them. U.S. national health care expenditures totaled $2.8 trillion in 2012, or about 17.2 percent of gross domestic product (GDP). Much of that spending happens in the last months of life.

As the report notes, although the annual increase in health care spending has slowed in recent years, the size of the sector and the possibility of continued future growth remains a significant concern to analysts across the political spectrum. One reason is the likely growth in public spending on health care, a consequence in part of growing numbers of people eligible for Medicare as baby boomers age and for Medicaid as expansions under the Affordable Care Act are implemented. These two programs are especially important in the end-of-life context because about 80 percent of U.S. deaths occur among people covered by Medicare, and Medicaid is the principal payer for long-term services needed by frail elderly individuals.

Culturally, Americans resist talking about death. As the report states, "More than a quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured these wishes in writing or through conversation." It turns out that this is the case despite the results of recent polls showing Americans harbor several consistent worries about care near the end of life, centered around its potential high costs and the desire not to be a burden -- financial or otherwise -- on family members.

As baby boomers age, the topic of death and dying grows in importance. In 2011, the oldest baby boomers -- born between 1946 and 1964 -- turned 65. Today, 40 million people in the United States are ages 65 and older, but this number is projected to more than double to 89 million by 2040. Leaving aside sudden death or premature death, most of us know that, at some point in life, health risks increase and diseases arise that require medical and human support. We want to live well into our 90s and beyond but without pain and suffering from serious illness or medical conditions.

So what should we be doing differently as we think about life expectancy? How can we better control the inevitable outcomes of long life so that we feel we are in the driver's seat of death and dying even if we have surrendered our licenses?

First, read.

Consumers need to understand their options given all the massive changes in health care delivery, insurance plans, demographic shifts and medical advances. Many people nearing the end of life are not physically or cognitively able to make their own care decisions. It is best to have thought about these things in advance. Having conversations with friends and family can ease the burden of letting others decide things for you -- like what a dying patient truly wants and wishes.

Many clinicians avoid sensitive subjects -- hoping family and friends will have the hard conversations with their patients. As the report indicates, "It is often difficult to recognize or identify when the end of life is approaching, making clinician-patient communication and advance care planning so important" to reduce confusion and guilt. Not only do these advanced care decisions help individuals, they can stabilize total health care and social costs over time.

The report stresses that the availability of palliative care services has simply not kept pace with the growing demand. A palliative approach can offer patients near the end of life and their families the best hope of maintaining dignity, quality of life, and relief from pain. The National Academies of Science report underscores that hospice is an important approach to addressing the palliative care needs of patients with limited life expectancy and their families. For people with a terminal illness -- or at high risk of dying in the near future, hospice is a comprehensive, socially supportive, and comforting alternative to technologically elaborate, medically centered interventions.

Fourth, support family caregivers.

They provide essential and increasingly complex services for people with advanced serious illnesses and those nearing the end of life. Three in 10 U.S. adults and nearly 2 in 10 U.S. workers are family caregivers (although these numbers represent all caregivers, not just those caring for someone near the end of life). This growing unpaid workforce, as the report notes, is often invisible; undertrained; and stressed physically, emotionally, and financially.

Amid all the tough issues in life, death deserves to be discussed. For many people, the end of life is lonely and overwhelming. By sharing thoughts and insights, we might just open up a dialogue on a subject that each of us will face.